Tag Archives: advocacy

Alice Cogswell and Anne Sullivan Macy Act (H.R. 3535)
Named for the first deaf student to be formally educated in the U.S.A. and for Helen Keller’s beloved teacher, respectively, the Alice Cogswell and Anne Sullivan Macy Act will strengthen the Individuals with Disabilities Education Act to improve results for deaf, hard of hearing, blind, visually impaired, and deaf-blind children, including those with additional disabilities.

On September 17, 2015, a comprehensive Bill to reform the education of deaf, hard of hearing, blind, visually impaired, and deafblind students was introduced in the U.S. House of Representatives. Sponsored by Congressmen Matt Cartwright (D) and David McKinley (R), H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act, the bill will amend the Individuals with Disabilities Education Act to address the unique needs of these populations. This is truly a historic event.

The Act includes 3 sections. Title I addresses issues specific to the education of children who are deaf/hard of hearing, Title II addresses issues specific to the education of children who are blind/visually impaired, and Title III addresses issues specific to the education of children who are deafblind. Click Cogswell/Macy Act to read the full text of the Bill. TITLE III begins on page 40 of the Act and includes wording which:

Designates intervener services in the “related services” listing
Reflects the need for the recognition of and training for teachers of the deafblind
Adapts the federal definition of deafblindness
Requires each state to specifically address deafblind issues in the development of its state plan.

The Alice Cogswell and Anne Sullivan Macy bill now needs to gain the sponsorship of many more House members, and it needs to be introduced in the Senate. Please take a few moments to contact your Congressional members to ask them to sponsor this bill either by phone or email. You can find your state Senators by clicking here, and your Members of Congress by clicking here.

To put it simply, the Cogswell Macy Act means hope! It means hope for families of children with hearing loss, vision loss, and deafblindness!

‘‘(E) SERVING CHILDREN WITH DEAF-BLINDNESS—When a State classifies children by disability, the State, in complying with subsection (a), identifies, locates and evaluates children with concomitant vision and hearing losses who are, or may be, classified in a disability category other than deaf-blindness, meaning concomitant hearing and visual impairments, the combination of which causes severe communication and other developmental and educational needs that adversely affect a child’s educational performance (and including children who are deaf-blind with additional disabilities), and provides (without prejudice to such classification) special education and related services to such children, including such services determined appropriate based on proper evaluation as would be provided to children classified in the State as having deaf-blindness.’’

The reason I began my journey in advocacy is because Stephen’s hearing fluctuated from one test to the next. It seems he had shifted between the world of the deaf and the world of the hearing. The audiologists didn’t know what to make of the improvement. They had previously reported to us that his hearing loss was permanent. Sensorineural hearing loss is typically permanent. As parents, the lack of answers we received, late diagnosis, and delayed early intervention as a result of lengthy referral process, were a source of unending frustration.

It was as if Stephen was just expected to be “all better now.” From our experiences parenting Stephen the idea was just ludicrous. Stephen had suffered the developmental impact of a catastrophic childhood seizure disorder. He started having uncontrolled seizures at 5 months old. It was a serious and sometimes fatal condition known as Infantile Spasms (see our story.) We knew instinctively that our son still needed help to access the world around him. It’s been nearly 7 years since the improvement in Stephen’s hearing. Stephen remains non-verbal with limited language and communication skills.

If the Alice Cogswell and Anne Sullivan Macy Act existed when Stephen transitioned from Birth-To-Three into the local public school, the developmental impact of early loss would have been considered. Stephen would have been entitled to services as a deafblind child. Despite the fact that he had been classified under “developmental delay” and then “autism” and finally “multiple physical handicaps” before receiving the correct IEP disability classification as “deaf-blind.”

We would have received the services we so desperately needed for Stephen’s language and communication development and school readiness. Stephen would have had the services of an intervener, who could help address issues specific to combined vision and hearing loss. His behavior would not have been so misunderstood and so often blamed on autism. He might not be struggling with basic communication at the end of 4th grade and his future in 5th grade might not be so uncertain…

Deafblind on the playground

Stephen loves to climb on familiar pieces of playground equipment.

Low Vision won’t stop him! Sometimes Stephen needs a touch cue to help him organize incoming information. We touch the leg that should move next.

That’s one way to get your child to drink water!

Stephen prefers coconut milk, and in the early days pediasure.

Like many children with seizure disorders, Stephen had to develop tolerance to heat gradually. #epilepsy

One way to stimulate drinking is to wet the face. Stephen first learned to drink water in the shower.

Stephen benefits from low vision techniques. We often struggle to remember to use hand under hand instead of our instinctual hand over hand.

To fully understand the significance of hand under hand, you really need to work with a blind child one on one. I will never forget my first experience with a child who was not my own and totally blind. When I reached hand over hand to help her, she immediately pulled back. I tried again more gently hand under hand so not to startle her and the difference became clear to me.

Dad helps Stephen maintain the line of travel. We try to avoid hand holding now that Stephen is almost 10 years old. #low vision #sighted guide

Stephen’s reaction to a high 5 is delayed. When joint attention has been established the reaction is much quicker. #deafblind #CVI

Stephen has been climbing this type of playground equipment with minimal assistance and close supervision since he was in 1st grade.

Stephen’s vision is better in the peripheral. He loves to look at the tiny holes in the floor of the playground equipment and is particularly amused with the way the light filters through the holes. #CVI

Sensory exploration is an important aspect of development for a deafblind child.

A native of Albuquerque, N.M., Rachel Kolb sees effective communication as essential to ideas, creativity and progress. She received a BA with honors in English from Stanford and graduated in June 2013 with a coterminal master’s degree in English. While at Stanford, Kolb has been active in the Stanford Equestrian Team, Leland Quarterly, Stanford Daily and Stanford Power to ACT. She aspires to be a writer, scholar and public disability advocate. Kolb was named an American Rhodes scholar in November 2012 and will pursue an MSc in contemporary literature at Oxford beginning in October 2013.

Awesome post from a fellow blogger! These are the same feelings that influenced my earlier post (Autism and the Hurtful Misuse/Abuse of Labels) For parents it’s always about the child! Teachers and professionals please keep this ever-present in your mind!

A month ago, my husband and I requested a school autism assessment to be done on our son, Callie. It’s been awhile, and since Callie is going to high school next year, we wanted to see where he is now, especially in the areas of Reading, Math and English. This is a new school, new district and new year — why not enter in high school with updated results? The diagnostician organizes, carries out and supervises the testing. He or she is the one who analyzes and evaluates the learning difficulty of a student and recommends ways to help and support that child. Although this being true, the definition and this district’s current diagnostician should not be in the same sentence. She is definitely not a favorite and I’m pretty sure I’m not her first pick for parent of the year. Callie’s transition into the district was nothing short of…

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It’s been soooo long since I’ve written on this blog that I’m not sure anyone will notice…

It’s been too long, WAY TOO LONG…

Parenthood is a demanding job, my hubby fell asleep with our 8-year-old in the middle of our queen size bed. He weighs 60 something pounds now, so maneuvering him out of my bed without waking him is something of a feat. I pull him by his feet to the bottom of my bed. Then carefully lift him over both forearms, bending my knees as I lift so not to break my back. (As if I could really carry a 60-something pound boy like a baby, in my arms, from one room to another.) Then I put his feet down on my bed and flop him over my shoulder while he and I both pretended he’s still sleeping. Then I stumble over the beanbag in the middle of the living room floor and barely make it to drop him on his bed with just a little bounce. I tuck him in and give him a kiss on the forehead.

So much has happened since I last wrote that I don’t even know where to begin. So I’ll start with my latest muse.
I was watching the last two episodes of Parenthood on DVR. I know my hubby will be mad that I watched them without him, so I’ll do my best to keep a poker face, and pretend I haven’t already seen them. I really won’t mind watching them again – 2 totally heart-warming, touching episodes. And the spoiler at the end is just breaking my heart. Why do they have to do that with the spoilers. If my hubby was awake he would have insisted that we didn’t watch the “next week on…”

As I watch the show, I’m reminded of just how valuable time is, especially time with those we love. Never take for granted the moments that make up a happy life. Moments of joy and sorrow, fear and hope, love and loss.

The holidays have come and gone with all the typical hustle and bustle of the season. Barely a moment to stop and catch my breath. I sit down to write and I’m pulled away and distracted with daily responsibilities. It’s easy to think of time to relax as a luxury, one I often feel lacking. I sometimes forget, as many busy parents do, that time to unwind is an actual necessity in life.

Always the farmer’s daughter, I find myself ever aware of the cycles of life and constantly in awe of the beauty therein. So I take just a moment to reflect and draw inspiration from the change of seasons. The cold, wet winter days remind me of the challenges that are behind us and of those that lie ahead. Winter is a time of rebirth. A time of quiet, peace, patience, and perseverance – waiting for the spring thaw, for the seed to sprout.

I’ve been so busy since I wrote last. I’ve worked a full-time job special needs parenting, a second full-time job as a volunteer education and legal advocate, and a part-time job self-employed in property management (imagine that a job I might actually get paid for 😉 ) Struggling to make ends meet and to fulfill ALL of my responsibilities to the best of my ability.

I’m happy to report our recent success in educational advocacy. Stephen started at his new school 6 weeks ago. He is now in a “language learning environment” where he will learn to communicate, improve his listening skills, and make the most of his own unique strengths and abilities. He seems happy and appropriately challenged at his new school.

I’m sure other special needs parents out there will want to know the specifics of how we got to this point, but in the typical legal mumbo jumbo fashion there is a non-disclosure agreement with the city. Suffice it to say that knowledge is the key that opens many doors. My best advice to parents is know your rights, know your child’s rights, consider your options, tread carefully, and just put one foot in front of the other and carry on, never give up! A long journey begins with the first step! Take it one day at a time, one step at a time, and persistence pays off.

The first few weeks Stephen was downright giddy with excitement about school. He’s slightly less enthusiastic about returning to school after the holidays, a pleasant indicator that he is aware it’s back to work and back to the grindstone we go. I’m at ease knowing that he is communicating in his unique way that he’s being asked to work hard and learn new things at school.

I’m reminded of seasons past, first with the Birth to Three program – physical therapy, aquatic therapy, feeding therapy, and occupational therapy. Each time he progressed through seasons of dormancy and seasons of growth. The seasons of rest being the times he looked forward to his therapies, and the seasons of growth being the times he would drag his feet just knowing that he’d be asked to do some hard work, and the harvest season – a time of success, accomplishment, and fulfillment. Seasons that inspire and challenge us with anticipation of what lies ahead. regression, disappointment, and frustration mere stumbling blocks turned into stepping-stones.

So it’s off to school he goes, and I’m a little uneasy starting again, anew. I miss the old familiarity of professionals we came to know and love like extended family (aunts and uncles, cousins and family friends.) I’m wondering how they are and what new things this season brings… I’m missing the text messages, and the ease of communication with someone you know and trust, the friendly smiles, and familiar nods. I know one day we’ll be there again – with short sentences, and unspoken words…

It’s amazing how much things have changed in the few short months since I started blogging.

My 7-year-old, non-verbal son is sitting in a nice warm sunny window watching Alphabet Amusement Park on Netflix. Over the last few months, he’s learned to navigate Netflix on the iPad like a pro. He unlocks the iPad with a pass code and without assistance, get’s on Netflix and chooses the correct user account (so that Netflix will stop prompting me to watch Leap Frog, Signing Time, or another movie/tv show for children that I’m already singing the theme songs to as I drift off to sleep every night…)

My blog has become a journal of personal experiences, a place to be myself, and to renew my strength. At first I wasn’t sure anyone would want to read what I wrote. My adventure in advocating publicly for children with autism and special needs began with a Facebook page. I quickly realized inspirational quotes, funny sayings, photos and bad news were the most popular Facebook posts. I was disappointed. I didn’t reach as many special needs parents as I had hoped. The resources I found over the past 7 years weren’t getting much attention. I had spent hours researching, reading, and learning how best to help my son, and I wanted nothing more than to share what I had learned, hoping the considerable effort I made would save some other exhausted parent time and energy.

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This April we’re celebrating Autism Awareness Month! Will you Light It Up Blue with me? Will you take part in some random Autism Kindness Acts? Maybe a night off for some autism parents you know? (I know I’m not the only autism momma out there that doesn’t want to ask!) Right now I’m thinking of my nice, warm, cuddly, blue fleece blanket. I’m so tired.

I saw some pretty blue quilts and sheets advertised in the weekend paper. Let’s face it, my autistic 7-year-old doesn’t really want to go shopping with me. My hubby doesn’t either, for that matter. When we go out shopping, you never can predict who will have a meltdown first – my hubby or my son! I’m so grateful to live in a day and age when I can do some shopping on the internet. Nothing beats shopping in my pajamas! 🙂

I’d fast forward to a day when parents of children with autism and special needs no longer need to fight for a “free and appropriate public school education.” A day when there are measures in place to enforce the Individuals with Disabilities in Education Act, for all children in need of special education. A day when enforcement of federal law is no longer the duty of overwhelmed parents. A day when exhausted parents can sleep soundly without worry because the community is standing together in support. “I have a dream…”

Stephen had a life threatening seizure disorder in infancy, and cortical vision impairment (blindness) at 18 months old. By age 2, my son received his 3rd life changing diagnosis – AUTISM. There were still many life changing diagnoses to come, but this one was the hardest to accept. It came as confirmation that Stephen’s neurological condition was even more likely to cause intellectual and developmental disability. The cards were stacked against him, but we weren’t giving up. How could we give up?

Light it up blue!

My son’s first day of school was one of the longest days of my life. I was so worried, I had left him in the hands of strangers. He wasn’t walking, talking, or feeding himself. He was still eating baby food from jars and pediasure from baby bottles. I watched the clock until it was finally time to pick him up off the bus. It’s hard to imagine what it’s like to be the parent of a child with autism or special needs until you’ve walked a mile in our shoes, or carried your baby to and from the school bus on the first day of school!

Everyday Life on My Street

My son has improved so much over the years. Early intervention services are key for so many children like him. He started walking at just over 3 years old. He still wears leg braces and crawls up the stairs, but he no longer qualifies for physical therapy services. He still struggles with both gross and fine motor skills and mobility due to low muscle tone and neuro developmental delay. He started feeding himself at age 5, and progressed to solid food at age 7. He still wears a diaper out in public, over night, and in his regular education classes. He’s potty training at home and in his special education class room.

First Day of Preschool

He still holds my hand for safety – on the street, on the sidewalk, in parking lots, and on the stairs. He still squeals with delight when we play peek-a-boo. He’s quite entertained with anything he can prompt you to say without speaking a word. He still thinks my silly songs, with words I make up to his favorite, familiar, childhood tunes are worthy of all the adoration that is given to the stars. He’s no more responsible for the noises he makes in church than he was on the day of his baptism.

Don’t get me wrong, we set our expectations high and we encourage him to be on his best (and quietest) behavior. We know that he won’t learn social skills without practice. So forgive me if we don’t wait outside in the car, where neither of us can hear. Instead we teach our son to listen. We sign to him in ASL and remind him when it’s time to listen, time to sing, and time to go. You really don’t need to turn around while the preacher is preaching and ask me if there’s something wrong with my son. I’ll politely tell you he has autism.

Please don’t embarrass my mother with your disapproving looks. She hasn’t had the years of practice that I’ve had, learning to “turn the other cheek.” I won’t tell you what I’m thinking, or respond with an equal measure of disapproval. No need to apologize for asking (but you should be more capable of listening to the preacher and less distracted than the 7-year-old boy behind you.)

Live Well,
Laugh Often,
Love Much

The sign hung in the kitchen of my parent’s bright and vibrant home for many months, before being replaced by my chic step-mom with an equally family oriented sentiment.

My niece quoted it on a beautiful day at the beach last summer.

I too love the quote and I’m equally inspired by it. Family is the beginning of every story and if we’re among the lucky ones, every story ends with family. When all is said and done, it’s what matters most.

They say, “there is no I in team” but there is both an I and am in FAMILY. Family is the place where we all belong – each of us as unique individuals and collectively all together.

No matter who we are or where we come from, we all draw on our own personal experiences.

One of our favorite family activities is apple picking at the local orchards. This photo reminds me of a time that was particularly special. It was one of our last family outings with Great-Grandma. She’s no longer with us and we miss her so much – her light-hearted humor, her stories, and her princess personality. She was always the princess – even in old age.

My grandma had Alzheimer’s. It seemed funny to me that even when she could no longer remember that my father was not my brother and her daughter was not her mother, she still remembered little Stephen had Autism and couldn’t talk. Stephen and Great-Grandma had a special silent connection that was beyond words! We love and miss you Grandma ❤

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We’re having a good time on vacation. Stephen lost his front tooth. I think he ate it. I noticed blood on his pillow and when I asked him he wouldn’t open his mouth. It seemed like he was crunching on something. He swallowed and then slowly opened his mouth. Missing tooth – nowhere we could find it. I guess he didn’t want the tooth fairy to get it 😉

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Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Unless otherwise indicated, all content is my own. You may reblog and share original content linked to this blog without prior permissions. Additional permissions for photographs (excluding photos of people) may be obtained by contacting me. Photographs of people/portraits are copyright Liana Seneca, all rights reserved.

'And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.' Roald Dahl